Waiting: One Person's Autistic State of Existence

“I do not feel real. I feel closeted inside. It is like I am looking outside of myself, but without access to the normal world. Am I destined to live inside with depression and hopelessness? Will I be able to come out into the light and feel like I exist? Will I ever be like others who I fanatisize were given the rules on how to exist? Will I be able to not cry myself to sleep and calm the child inside who has never been calmed? Will I ever be able to use myself in the presence of another? Please, please make me into a real person. I am literally dying inside.”

"Have I told you that I feel like I am waiting to be ‘bought-out?’ It is a funny position to be in. I feel that I cannot initiate anything because I am stuck inside and that I need to come out first before I can talk. Picture me as a lost child that is stuck inside and cannot come out of myself. I feel trapped and alone. Will someone come soon and help me out of myself out of my trapped life? I need someone to understand. I am waiting and waiting and waiting! I can no longer stand being like a wooden soldier who cannot move. Life is very unbearable and I am just barely holding on."

"I do not have a self I can use with others. I do not know this literally, but I do know I am waiting to use myself. I look out my window, the window of my soul and I yearn to be like other children. They can talk and play. I can only live within the shell of this person, waiting to be seen, rescued and understood. I am waiting to be a person. I am waiting to be like others. The waiting is interminable. It never ends. I cannot think of anything else. This dilemma is on my mind when I wake up in the morning and go to sleep at night. This nightmare consumes my ever-waking moment."

What is this autistic boy telling us? Let’s focus on what he is telling us regarding the interminable wait he is confronted with. He is talking about his state of existence and explaining it very well. His state is one of depression, hopelessness, being stuck, inability to move and waiting. He is waiting to be rescued from an unbearable existence.

From the perspective of an ‘Incomplete Attachment’ we can make sense of his state of existence. I have previously discussed the depressive and hopeless mood that comes along with not having had a completed attachment. The child cannot access parts of himself and so is left in what appears to be a static state of depression. Within that state because he does not have access to his feelings (lacks self-agency) he cannot move his body (physically and psychologically). He is stuck within this state of existence until someone on the outside realizes what is going on and helps him complete the attachment process. Thus we can say that he needs another person to help him out of this state of existence. Therefore he is destined to be in this waiting state of existence as unbearable as it is.

"Others Actions Stop Me": Nonverbal Communication and Autism

“Have I ever told you how the actions of others stop me from talking? It is as if their hand movements, their eyes or their tone of voice stops me from talking. I find myself focusing on their behaviors and forgetting what I should say in response. It is as if their behaviors become more important than their words. For example, when my mother raises her eyebrows at the same time she raises her voice, I find I cannot move or talk. It feels like her behaviors are a sign for me to stop and I can't go beyond that. I see my sister yell back at my mother at times like that, but I can't. I see that my sister gets into trouble for responding back. Maybe my way isn't so bad, but I wonder what makes me stop and not have the ability to respond? I feel like my body just won't let me respond. At other times, when my mother is in a good mood, I see happy behaviors - her eyes twinkle, her tone of voice is mellow and soft. At times like this, I say to myself I need to capture this moment and try to fit in all my words. Don't they say ---it's all in the timing?"

What is this autistic boy telling us? He seems to be entrapped by others’ nonverbal gestures. He can see that this does not stop his sister from talking back to their mother. He wonders why it stops him. He also realizes that if his mother is in a good mood he has more of a chance in using words (if he has them).

Let’s take a moment to focus on this area of nonverbal communication. It seems that our autistic boy has no choice but to focus on the nonverbal gestures of others and in turn feels manipulated by their nonverbal gestures. The behaviors of others stop or propel him to talk. From the perspective of an Incomplete Attachment, we can possibly make sense of what is going on here.

Let’s take a step back and think about nonverbal communication and nonverbal gestures. From my point of view, the definition of nonverbal communication is the body’s way of unconsciously communicating feelings and emotions. Sometimes a typical person may not have access to his emotions so that person may not be consciously in touch with a specific feeling and thus cannot verbally express a particular feeling. Fortunately, our bodies always are in touch with our emotions and those feelings come out through our nonverbal gestures/communications. The person with autism does not have access to words, but his body retains the memory of his emotions. Thus the unconscious child with autism is tuned into nonverbal communication much more than he is tuned into verbal communication. That is why our autistic boy focuses on the nonverbal gestures of others. Typical individuals are simultaneously unconsciously and consciously aware of what others (this will depend on the individual and their level of consciousness of nonverbal gestures) are saying nonverbally. If we think of the individual with autism as unconscious, he would by definition be more attuned to nonverbal communication versus verbal communication.

Another point to remember here is that not only is our autistic boy more attuned to nonverbal communication as compared to the typical person, but he also has no way to access his feelings and subsequently communicate those feelings (lacks self-agency). Thus he is left to only focus on the nonverbal communication and feel manipulated by others’ gestures.

Finally, as this autistic boy develops, gains an attachment, has access to his feelings, develops self-agency and is less dissociated he will not only be able to read others nonverbal gestures, but also will be able to verbally express his feelings like all typical people do. Thus as the person with autism develops, we see a change in his ability to function in the world. Autism is seen on a continuum from low functioning to high functioning to Asperger’s. I think there is a good reason to look at autism in this way. The child does develop. The child can actually move off of this continuum and become as typical as others.

Checking and Keeping Things in Order

“I have to check everything before I leave the house. If I deviate from my specific process, I have to start all over again. If anyone interrupts me in the process of checking, I have to start all over again. I am afraid if I do not follow the checking rules something bad will happen. When I do not do things in order it feels like I am doing something wrong. I cannot deviate from what I think of as my order. Order makes me feel comfortable. It relaxes me. Also I am not equipped to explain myself if I am going out of order. I do not have a way to defend myself. Order is my way of knowing what to expect and to know what comes first, second, etc. I cannot use myself so how can I explain if things get out of order?”

What is this autistic boy telling us? He checks and keeps everything in order and cannot deviate from his process. This reminds me of another autistic boy who would line up letters of the alphabet. If I took a letter and put it in the wrong place he would immediately change it back to its proper place. Both these boys are telling us that keeping things in order and checking helps to keep them calm and relaxed. They are self-regulating. They are both very fearful if things are out of order and not in their proper place. This autistic boy is very aware that he does not know how to express his concerns about order. He is obsessed with this need for sameness and order.

Checking and order seem to provide, as this autistic boy told us, a way to calm himself down and to regulate himself. Infants learn to self-regulate through the mutual regulation that takes place between mother and child during the attachment process. The child with autism has an incomplete attachment so can only rely on himself for methods to self-regulate. Each child with autism will find his own methods to self-regulate. As the child completes the attachment process, he will learn other methods to self-regulate through the interaction with a caregiver or a therapist. As this occurs, he will start to feel less anxious and will be able to give up coping strategies that were developed to manage his anxiety and stress.

I also think that other things are going on that we might speculate about. From the perspective of an Incomplete Attachment this child is trying to keep things in order because 1) he feels no order from within. In other words, he lives with a chaotic internal world, which is dissociated and does not allow him to have access to his words (lacks self-agency), 2) if he had access to his words then he could live without fear and 3) be able to respond to spontaneous situations and allow things to be out of order. Spontaneity from this perspective comes out of being sure of oneself which comes out of the ability to have access to ones feelings and to express those feelings freely.

This autistic boy may be checking for multiple reasons: 1) it provides as mentioned previously a way to feel calm relaxed and self-regulated and 2) from the perspective of an Incomplete Attachment, the autistic child is dissociated and can never be sure of ‘what has just happened’. He is never sure that what he has just experienced has really happened. He has no way of ‘testing reality’ by asking questions especially if he is low functioning. Thus he is left to his own devices to try to figure out what is going on. In a dissociated state, nothing feels stable and the child cannot be sure of what is happening at any point in time. Thus the checking is his way of making sure that everything is stable and that what he really saw did actually happen.

“Please Help Me to be Separate”

“There is this “gluey-gooey” feeling I have with my mother. I feel stuck to her as if someone is playing a joke on us. I cannot exist without her. It is as if we are one. I cannot move unless I know where she is. I cannot talk unless I hear her first. I watch her very closely to know what I am supposed to do. I can only move my body after she moves her body. It is like we are glued together. Never to be separated. In my mind, I try to separate and pull myself from her, but my body will not let me. We are stuck, never to go our separate ways.”

“Sometimes I feel so connected to my mother that I cannot tell the difference between her and me. As much as I try to separate from her, I can't. It is like we are two peas in a pod. I have to know how my mother feels about everything. If I know how she feels then I can do what she says and everything will be okay. It is not as if I want things to be this way. They just have to be. It is like her opinion is mine. I am obsessed with how she feels even if it is at the expense of my own opinion. When I find out what she feels then I feel safe. Where are my opinions? Where is myself? I am not independent from my mother and from others. I feel doomed to live this way. I am obsessed with thinking about how to undue this predicament. How do I get unstuck? If I stand far away from her and talk to her I still feel connected to her. If I talk to her on the phone I still feel connected to her. This connection is like a rope around my neck that is choking me. I want to be a separate person, but I can't. How do I separate from my mother? This idea torments me daily. It causes me to have a lot of pain. I cry myself to sleep thinking about how to be separate and how to be a person.”

What is this autistic boy telling us? He seems to be telling us that he is not an independent person and cannot function separately from his mother. He definitely is saying he wants to be separate, but feels he cannot make this happen. Most people do not have to think about being separate from others. He is very aware of his dilemma, but has no ability to make his situation different.

This boy is giving us an example of what it is like to live without self-agency. Self-agency is the ability of the self to take initiative, to regulate oneself and to be the source of one’s behavior. A sense of self-agency is developed within a relationship with another person. The autistic person has an incomplete attachment thus does not have the advantage of self-agency. The functioning levels of those with Autism Spectrum Disorders correspond with the degree of self-agency the individual has. The lower functioning individual has very little self-agency and thus is nonverbal or can only use echolalia. As the individual gains more self-agency we start to see the use of words such as “me” and “I” as well as more interactive behaviors. Then we start to call the person high functioning.

Feeling Alive

“I am eight years old. When I get scared I go into the bathroom. I take off all my clothes and lay on the bathroom floor. Does anyone see me? Can you feel me? I fantasize that I am alive, and being touched all over. I close my eyes and touch myself all over as if someone else is doing it. I feel alive when I do this. I wish someone else would do this. Consume me and make me feel alive. I want to be examined from head to foot. Examined as if I am important.”

What is this autistic boy telling us? It seems that he does not feel alive. It is hard to know exactly what he means by being alive. By speculating, it seems he feels he can make himself feel alive if he actually does what he wants someone else to do – touch him. He seems to be acting out his need to be touched and seen. He seems to be telling us that he wants to be known and that he wants every orifice to be touched and seen.

Every human being needs to be seen, recognized and ultimately touched by another human being. This child has missed out on this opportunity and is thus acting out his need for this psychological touching. It may seem strange that a young child would go to great lengths by acting out his needs through his behaviors. For autistic children this is the norm and must be understood for what it is and what he means through his behavior.

Most typical children can use words to express their needs. Autistic children cannot use words and thus must rely on their bodies to express their needs. We can also say that typical children have had an attachment. It is through an attachment that the child learns how to regulate himself through the mutual regulation process between caregiver/s and infant. During the attachment process we also come to understand ourselves by how our caregivers’ understand, accept, validate and recognize us. The caregivers help the child to symbolize his experiences. Unfortunately, the autistic child has not had the benefit of an attachment to a caregiver and thus is waiting for the attachment process to be completed. It can be said that he has an Incomplete Attachment.

It is also important to note, that all typically developing as well as autistic children have varying degrees of what I call self-agency. Self-agency is the ability to use oneself in relationship to others. In the lowest functioning autistic child he has no self-agency and thus has no words or is echolalic. The higher functioning the child (typical or autistic) the more self-agency he has. The autistic child will always use his body as a substitute for his lack of self-agency. Thus what he tells us through his body is very important for us to understand.

One more key idea is important to cite here. Autistic children when communicating with their bodies are talking about their psychological needs and not necessarily their daily needs. The typically developing child will express the desire to have a cookie, drink some milk, etc. Of course the autistic child has those needs as well, but he uses his body to express much deeper psychological needs such as our autistic boy in this blog. Through his body (unconsciously) and what may seem strange to some, he is telling us he has a deep need to be touched and seen. We can assume that these needs have not yet been met.

Keeping Hope Alive: Helping the Child with ASD Navigate the Attachment Process

“Why does everyone know the ‘rules of how to live’? Why do I have to fend for myself? I continue to be a lost child drifting in air and at the mercy and whim of others. My body will not work like those of others. I have no control over my bodily functions. I am not in control, but feel everyone else has control over me. Is there anyone that is listening and do you know what I am saying? Why is it taking you so long to understand my plight? I feel that I will have to live in this never land the rest of my life.”

Let’s make sense out of this autistic child’s experience. We can only hypothesize about what is occurring. This child believes he has been left out of the developmental process. He is very aware that others can function appropriately and that he cannot. He feels no control over his body and feels he cannot make a difference in his own life. He is also looking to others to help him with this predicament. He knows he cannot manage this situation by himself. Finally he believes there is no hope for the future and that his life will forever remain the same and he will remain in a ‘never land.’ He communicates great frustration and hopelessness.

This child is also describing the experience of not having had a completed attachment. From the work of John Bowlby and Mary Ainsworth attachment theory has developed. Without going into the details about attachment theory (if interested review the work of Bowlby and Ainsworth) four categories of attachment have been recognized and it is believed that all people (including those with ASD) fall within these categories: secure, ambivalent, anxious and disorganized. It is my opinion that people with ASD do not fall within any of these categories and have not yet had the benefit of a ‘completed attachment.’ Instead I have proposed a new classification that takes into account the autistic experience, which I call an ‘Incomplete Attachment.’ Instead, the child is left in a dissociated state, unconscious and waiting for the attachment process to be revitalized. If you have never experienced an attachment you are left to navigate the world without a sense of security, trust and ability to use yourself in relationship to others as one would have who has benefited from an attachment. Thus it can be said we are working with a person (ASD) who has no experience of being able to experience themselves in relationship to others. It is important to note that this is a major reason the child with ASD has difficulty navigating interpersonal relationships.

Therefore the process to help the person with ASD is very time consuming, complicated, but not impossible. It is time consuming because we need to start at ‘square one’ in helping the child to develop a secure attachment, trust others, gain a sense of security, develop the ability to self-regulate, to learn to communicate and to express his feelings. All these developmental abilities would have been acquired through the attachment process, which this child has not benefited from. The key purpose of this blog is to emphasize that the time consuming nature of working with those with ASD is daunting, but can be navigated. The child can develop what is called an earned secure attachment, but the development of an attachment will be more time consuming and difficult than if acquired as an infant. The solution is to not give up, but instead to keep the hope alive that the attachment process can be successfully completed for the child with ASD.

Autism and Dissociation

Through the lens of an “Incomplete Attachment” I have described that the autistic child is experiencing dissociated states. What does this mean? From my perspective, the child has many parts of himself that have not become integrated as a whole. These aspects of the self have not been validated and recognized by “an other” so the child, in turn, cannot use and see himself. Thus the different parts of this child become dissociated and cannot work together to the benefit of the child. We can say that this child does not have the ability to go from one part of himself to another. The child also cannot go within himself to retrieve these dissociated parts.

How can I recognize dissociation in an autistic child? Dissociation is easy to recognize. We all have aspects of dissociation, but it is more profoundly seen in Autism Spectrum Disorders. The following are examples of dissociation: 1) reduced sense of pain – the child may burn himself, but not demonstrate any outward behaviors that say, “I am hurting.” The pain is there and he feels it, but he is split off from his ability to claim it and name the feeling, 2) Exceptional savant skills – such as extraordinary ability to remember days of the week of birthdays and dates associated with events, ability to do mathematical calculations that others can only do with the help of a calculator or great musical and artistic abilities. These abilities seem to coexist with what appears to be severe disabilities. Most people observing such a mixture of behaviors would be confused and conclude that there must be something “wrong” with a person who on the one hand has great musical ability or artistic ability, but cannot talk. I would say this is an example of dissociation in that the emotions are split off from the intellect of the person, 3) Cannot shift thinking from one subject to another – this is an example of not being able to go from one part of the self to another. The individual is demonstrating on the outside of himself what is occurring on the inside of him. In other words, his inability to go from one part of himself to another, and 4) the child can think through mathematical problems, but cannot think through and understand social interactions – the child has access to his intellect, but no access to the emotional parts of himself. The emotional side is harder to access if you have never had an attachment. It is through an attachment that one feels understood and seen and in turn can talk and have access to the emotional parts of one’s self.

These are only a few examples of what I think about when observing the autistic person through the lens of dissociation and an “Incomplete Attachment.” When one thinks about autism from this perspective than one can have hope that the child can develop into an integrated person. The work with the autistic person is to help them to become more conscious of the split off parts. This includes helping them to name their feelings along with the development of a trusting relationship with “an other.” As they become more conscious of themselves their dissociated parts will begin to work together.